CureSearch's daughter - Dx 2003

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cureSearch
New Member
Posts: 8
Joined: Fri Mar 02, 2007 10:21 pm

Re: CureSearch - Our Daughter

Post by cureSearch »

Thank you Amanda and Arch. There are three reports in the literature about the use of interferon. One of them is in the library section of iCureASPS website: http://cureasps.org/library/7_ASPS_IFN_03.pdf. We have no way to know if interferon has any effect on ASPS. This is only my speculation. Interferon alfa 2b has anti angiogenic effects and it affects the body's immune response as well. It could induce anti-angiogenic effect during the year of the injection. If the interferon also affected the immune response as well, these effects could have been long term effects. However, it is impossible to make too many conclusions from one case. I wish we had more studies to compare.
Have all a Wonderful Thanksgiving, Happy Holidays and a Happy New Year
cureSearch
New Member
Posts: 8
Joined: Fri Mar 02, 2007 10:21 pm

Update: 10 years after ASPS diagnosis

Post by cureSearch »

Hello everyone,

Our daughter was diagnosed with ASPS in the summer of 2003, almost 10 years ago. Between 2003 to 2007, she went through 3 surgeries to remove the primary tumor and all large tumors above 3mm in both her lungs. Since 2007 there are no growing tumors in her body.
Recently in a lung CT scan we learned very exciting news, that there are indications that small met-lungs seen since 2003 are shrinking.

Those findings are very encouraging and I hope that they will help others to make decisions regarding treatment of their loved once: It is important to perform radical surgeries to remove all the ASPS tumors from the body. Treatment with Interferon alpha 2b may help. Here is a summary of everything that our daughter has done in the last 10 years:

1. Shortly after the diagnosis in September 2003 she started an interferon alpha 2b treatment of 5 MIU (million units) daily. This dose was reduced in October 2004 to 3 MIU and continued for the total of 13 months.

2. In September 2003 she had surgery to remove her primary tumor from the shoulder.

3. In February 2005 our daughter went on a surgery to remove more than fifteen tumors larger then 3mm in her right lung.

4. In February 2007 our daughter went on a surgery to remove one growing met in her left lung and additional tumors larger than 3 mm.

5. Since February 2007 we learned that all the small remaining lung mets do not change their size and in December 2012 we learned that it is possible that remaining mets are shrinking.

Best Wishes to all of you.
mikko
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Posts: 44
Joined: Tue Jul 28, 2009 4:03 am
Location: Finland

Re: CureSearch's daughter - Dx 2003

Post by mikko »

Congratulations from Finland!
Ivan
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Joined: Mon Jun 26, 2006 8:31 pm

Re: CureSearch's daughter - Dx 2003

Post by Ivan »

What was the size of the largest mets that were NOT removed by surgery later when Interferon was started?

The point of this question being: assuming interferon has worked, and those mets are now necrotic, what is the largest size it is capable of killing? This is a very far stretch, obviously, but nevertheless.
Bonni Hess
Senior Member
Posts: 1677
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: CureSearch's daughter - Dx 2003

Post by Bonni Hess »

Dear CureSearch,
It is with the greatest joy that I read the WONDERFUL!! news and VERY GOOD!! results of your dear daughter's most recent annual scans which show continued stable disease since 2007 and shrinkage of her remaining small lung mets :-) This is VERY exciting and encouraging news and I deeply share your and your family's great joy! :-) I think that your daughter's very successful outcome strongly supports your observation that "It is important to perform radical surgeries to remove all the ASPS tumors from the body." Inexplicably some doctors seem to feel/advocate that once the primary has metastasized there is no reason to resect it and they recommend pursuing systemic treatment instead of removing the tumor. However, although I am not a doctor, based on your daughter's experience and my extensive research, patient observations, and personal experience through our eleven and a half journey with this challenging disease, I personally strongly disagree with the approach of not resecting the primary if resection is possible. I think that it is obvious that as long as the primary is in place, as well as other tumors in other parts of the body, it/they increase the body's tumor burden, weaken the body's immune system making it more difficult to fight the disease, and reduce the potential effectiveness and success of any systemic treatment. I know far too well that there are not yet any definitive answers to treating ASPS, and there are always some exceptions, but the most up to date medical studies have documented that the most effective approach to managing ASPS at this time is removal/destruction of tumors with resection/ablation/or radiosurgery. Hopefully someday soon an effective permanent cure will be found. In the meantime, your daughter's success provides great encouragement and Hope to all of us in the ASPS Community, and to me it demonstrates the critical importance of a very pro-active and aggressive approach to removing/destroying all resectable/treatable tumors in the body.
Please give your dear daughter a special High 5 and happy hugs from all of us Hesses, and know how deeply we share your happiness and strengthened Hope.
Sharing your joyful news with special caring thoughts, very best wishes, and continued Hope,
Bonni
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